What does endometriosis feel like?

Endometriosis has come into the spotlight in recent years, in part thanks to the writings of actress and director Lena Dunham, who underwent a complete hysterectomy in 2018 in the hopes of ending her struggle with the debilitating and painful disorder. But how do its symptoms differ from other health issues?

What is endo?

Notoriously tough to manage, the disorder is caused by tissue similar to uterine lining growing in places it shouldn’t, such as the abdomen, womb and bladder. Like the lining of the uterus, this tissue bleeds each month causing severe and chronic pain. The tissue can grow around organs and fuse them, making surgery to remove it a complex task. Even Dunham’s solution of removing the uterus will not necessarily be an end to her suffering, as there could still be other areas of tissue that must also be removed.

Who gets endometriosis?

Endometriosis can affect women and girls, transgender, non-binary and gender-diverse people assigned female at birth, regardless of age, background and lifestyle. Current research estimates that up to 1 in 7 women may have endometriosis.

What does it do to sufferers?

The pain caused by endo can be so intense and unrelenting that sufferers will often pass out and are frequently hospitalised. Some sufferers describe the pain as a pulling sensation, which feels as though their insides are being ripped from their bodies.

While it may sometimes be mistaken as period pain at first, the intensity and severity of the pain should indicate that this is beyond the usual realms of discomfort. A hot water bottle and an ibuprofen are not going to come close to helping. Another indication that your pain could be endometriosis is that it can often happen anywhere in a woman’s menstrual cycle, although it can be worse during bleeding.

Endo can also make intercourse painful, cause fertility problems, and give sufferers strife with bowel movements. It may also cause fatigue and mental health issues (understandable given the level of pain), and can have flow-on effects for immunity.

How is it diagnosed?

There are a wide range of treatments that a gynaecologist can offer to women with endometriosis, depending on the severity, but first it must be properly diagnosed. This is done through laparoscopic or keyhole surgery which is the only definitive way to diagnose endometriosis. Before this, a doctor may order imaging such as an ultrasound of the uterus, or other tests to rule out issues with the surrounding organs.

Unfortunately, sufferers often experience other health problems in conjunction with endo, such as irritable bowel syndrome and chronic fatigue. The diagnosis can be difficult to obtain due to the similarity of symptoms to some of these other problems but once diagnosis is obtained, doctors will be able to look at ways to treat or manage it.

What can be done?

Dunham’s decision to have a hysterectomy (removal of the womb) is at the extreme end of treatment and along with oophorectomy (removal or one or both of the ovaries), is usually only considered in the most extreme and persistent cases.

Treatment for endo can range from making lifestyle changes to surgical intervention. Many sufferers will see improvement by following a specific diet and making use of complementary therapies, while others will find relief with hormonal treatment. For surgical treatment, a laparoscopy is conducted under general anaesthetic to remove the offending tissue.

Who should I see about diagnosing or managing endometriosis?

Dr. Geeta Singh
Obstetrician, Gynaecologist​
Dr. Angela Beard​
Obstetrician, Gynaecologist, Fertility Specialist
Dr. Greg Phillipson
Gynaecologist, Fertility Specialist
Dr. Pip Shirley
Gynaecologist, Fertility Specialist